Eleanore Vs. A Doom Free Easter

Dearest bunnies,

 

Easter has always been one of my favorite holidays. It’s one of the few holidays that were truly wonderful and peaceful when I was a child in my abusive household. Furthermore, the weather is lovely, there are flowers and candies, and it reminds me of my grandmother. When I was a youngling, we would often go to my grand aunt’s home in the mountains and search for well hidden eggs and presents in their backyard, which was acres of wild forest. These are some of the only good memories I have of my childhood, which often feels like a completely different life from long ago. Unfortunately that goodness never lasted, and as I grew older, my family crumbled.

I sometimes find myself craving to go back to those seemingly perfect Easters. I miss how good life felt on those days, how we forgot about so many of the terrible things we had to suffer through as children. They were moments of true happiness that were fleeting, but not forgotten. Fortunately, this Easter was absolutely wonderful, the best I’ve had since I was extremely young, and I am so pleased that I’m able to say that. Flashback!

I spent the great day of bunnies with my boyfriend and his family. It was relaxing and fun and everything that a holiday weekend should be. We celebrated both his mother’s birthday as well as Easter, so the whole weekend was a party. Saturday night I agreed to help my boyfriend’s mother make overnight french toast for Easter brunch; we even decided to make a tiny pan for me with gluten free bread. I was extremely excited about this since french toast is one of my favorite things in all existence next to my friends, my boyfriend, pizza and puppies (the order tends to vary).

Unfortunately, I ended up being utterly useless because a migraine forced me into bed. My body was overwhelmed with pain, my eyes ached from the light, and my stomach twisted itself into an unhappy, nauseated pretzel. I was seriously bummed that I wouldn’t get to help and felt like a disappointment, but my boyfriend assured me it was alright. We’re both still learning that the number one rule of chronic illness is that when your body says, “Stop! I need rest!” You have no choice but to abide, or suffer repercussions even worse than the current symptoms. I try not to fight it much, but when I do, he kindly reminds me that it isn’t entirely my fault.

The next morning my migraine had moved out of my brain and  I was determined to be up early to help with the rest of Easter brunch preparations. I walked downstairs a little worried that my boyfriend’s mother would be upset with me. Instead, she and a few others immediately asked how I was feeling, genuinely concerned about my well-being. After assuring them that my brain did not explode like I thought it might, she informed me that she had made me my own special pan of french toast, and that she even was sure to wash her hands in between breads. I was simply elated, especially considered she had never cooked for me before.  My plate on my first Easter brunch ended up looking like this:

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And my face ended up looking like this…

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…And everything was fantastic. I told her after brunch that she had successfully made me a safe and delicious meal without any help of mine at all.  We fist bumped, and I was full and happy.

I always make a big deal about when people do these sorts of things for me, and most people don’t understand why. Well, allow me shed some light on why I feel compelled to do so. I have come to realize many people take eating for granted. I don’t mean just in the sense of having food to eat, but also in the sense of being able to eat anything they want, not having to fear fatal allergic reactions or Celiac reactions, and others being able to cook for them without second thought. Considering I have Celiac Disease, 13 food allergies and now GERD, I never expect anyone to cook for me because it just too challenging, not to mention stressful for me because unless I have watched their every move, I can’t be sure they didn’t cross contaminate or add something dangerous. I am by no means a picky eater, rather it is almost always a difference between life and potential death (and people wonder why I’m anxious!)

I am always thrilled when friends and family of friends take the challenge to make me safe food. My friends in Michigan, a few friends back home and now my boyfriend’s family may not fully understand just how much it means to a person such as myself to have people care enough about me to ensure that I can enjoy myself like everyone else in a safe and healthy way. It makes me feel loved, understood, and cared for, knowing that I’m worth the bit of extra thought and preparation to ensure my happiness.

I admit I was slightly anxious that day after I ate since the Celiac reaction sometimes takes a while to fully set in, yet two days later I have no reaction at all. I had the most spectacular doom-free Easter, and I can only hope that my life will be filled with plenty more.

To all the people who put in extra effort into making me feel safe, comfortable and loved, I am immensely grateful for you. I am one blessed bunny.  (O:)3

*nose wiggle wiggle wiggle nose wiggle*

~A Bunny Somewhere, Probably.

 

 

Eleanore Vs. Pop-Punk Perfection

Dear pop-punks, punks, metal heads, hippies, and everyone else I can’t think of because wow I’m tired,

Last night I went to my first pop-punk show in two years. It’s been far too long considering when I was a teenager, every bit of money I had went to concert tickets. I would do odd jobs around my house, save up allowance, and covet every piece of spare change I could find. My change would be safely stored in a dinosaur piggy bank until it was heavy enough to evoke a trip to a coin machine. Music has always been my affinity, my priority, and for a while, I had enough money to at least somewhat feed my obsession.

Of course, in the past two years, gaining more independence and losing some of my health meant also having far less money. Now I find myself counting pennies to save up so that I can hopefully one day live in my own home, rather than the spare room of someone else’s. Thankfully, I’ve always been fairly talented at sticking to a budget, and every now and then I have a few spare dollars to put towards something that makes me happy rather than just keeps me alive.

Most recently, those few extra dollars brought me to The Ready Room in St. Louis last night. My friend and I (another person who also suffers from chronic illness) went early and ended up snagging the only table in the place that was in view of the stage. It was also next to the free water cooler, so we immediately dubbed it the “sick girl corner.” It was absolutely perfect for us. Since I am no longer 18 and am in chronic pain from multiple illnesses, standing for four hours is no longer a talent I have. I was ecstatic that my body wouldn’t be screaming, “get me out of here!” while waiting for one of my favorite new bands to take the stage.

As I sat waiting for the headliner, I sneakily observed the crowd. I am an analyzer, a people watcher, or as some like to call it, a creeper. The diversity of the crowd brought me so much joy.  I was surrounded by people of every kind, even several with variations of chronic illness. Their presence only affirmed what I love most about music; it does not give a single fuck about your abilities or inabilities, whether you’re jumping in the front or can only gently wiggle in the back. We’re all there for the same reason, our passion for music driving us to be nothing short of ourselves, whatever that means to us.

My friends and I happily sat just out of reach of the rest of the crowd, gently bopping along to the opening bands. While at times I felt slightly bittersweet that I couldn’t be on my feet, I tried to ignore the harsh judgement of my insecurities and enjoy the show.  Finally the headliner took the stage; State Champs, a fairly new Pop-punk band that immediately won me over when Nat posted their song “Secrets” to my Facebook. I felt the explosive drums in my chest replacing the constant tightness of my anxiety. I watched everyone dance and jump, hands in the air, fingers reaching for infinity. Despite having little energy and my back aching, my friends and I made our way into the crowd. well, okay, at least to the back of it.

We entered the main area, trading the light of the bar for the darkness of the venue, splattered with blue and white lights that danced in time with the music. The voice of the singer, Derek, was uplifted by the voice of hundreds of people singing along with him, myself being one of them. I couldn’t crowd surf like many people did, nor could I jump! jump! jump! as we were directed to. Instead, I ferociously wiggled and danced with fervor. I bounced and I screamed and I sang as loud as I possibly could, feeling as if my vocal chords might implode and not caring if they did.  During their song Slow Burn I sang especially loudly with the chorus:

I hope it all comes back again,

I want to get stuck in your head like ,

Everlong playing on the late night radio.

I closed my eyes and as I moved my sickness was melted away. My pain was blasted into oblivion by drums and guitars and bass. I listened, I sang, I danced, and in that moment, my life was perfect.

 

Every day I face challenges that sometime feel too monstrous  for me to conquer. Some days I feel strong enough to fight back, determined and stubborn to change it all for the better. Other days I wake up feeling already defeated, sick and hurting. Regardless, moments such as these remind me what I’m fighting for, and force me to acknowledge that the battle is always worth it, which I appreciate since chronic pain can make it easy to forget. I am reminded my existence doesn’t always have to be painful and that my happiness doesn’t always have to be extinguished. I am working on collecting these moments and keeping them close to my heart so that when I am defeated, I can look back and realize that no matter how tiresome and difficult my life feels, it still contains a few perfect, untouchable moments; and I am just so incredibly grateful to be alive for them.

We set a fire that both ends with our best lines,
And best intentions.
Let go of what we know, and make tonight our reinvention.

~Slow Burn – State Champs!

 Eleanore Vs. Abby Normal

Dearest blossoming humans,

I am well aware that it is against protocol to write part one of a post and then go on to write something unrelated before writing the other half. What can I say; I’m a rebel. Ironically, this post is about the concept of normal and what it means to a chronically ill person, so if there ever were a time for me to not follow an unwritten rule, it’s now.

Yesterday afternoon I was driving from work to a doctor’s appointment. I was in an exhausted haze and in a great deal of pain, but still my mind was overthinking as the thunder grumbled in the distance and the rain flung itself against my car. As I joined my fellow drivers on the freeway, I looked about, wondering where everyone else was headed.  This brought me to the thought, “What the actual fuck does it mean to be normal?”

I’ve never been what would be considered “normal,” which means I’ve heard the word a great deal in my life, especially in the way of judgment. “Why can’t you just be normal?” I’d be asked, by all sorts of people. On my worst days, I would pray before bed that I would do anything in the world if I could just wake up and be normal. I wanted to look normal, act normally, speak normally, and most importantly of all,  have normal, standard health and be rid of my chronic pain and health issues.

Nowadays, each day is a battle not only with my health, but to fight against my impulse to  wish myself into oblivion as I have for so long.  On days where it seems I can’t even do the simplest things right, or the days every single joint and muscle in my body are inflamed, I still have that thought. However, here is my confession: I have no idea what “normal” means. So what exactly have I been wishing for?

Okay, let me rephrase that. I know what normal means, mostly, though more often than not when people are critical of my abnormalities, they’re comparing me to someone else as an example of how I should be. I wanted to know the exact, non-bias definition of the word, so I posed this question to the Google. The Google was happy to answer me, and within a click of my finger and a blink of an eye, it brought me my answer:

Normal: Adj. Conforming to a standard. Usual, typical, or expected.

Well, that definition certainly explains it well…sort of. It doesn’t help as much as I hoped. It says conforming to a standard, but whose standard? Usual and typical of what exactly? The more I dissect this, the less helpful it is. Sometimes our language can be vague and confusing, and for an overthinking human such as myself, it is incredibly aggravating. For the sake of my post, let’s just assume the standard is the standard of American society (since I live in America) and what is expected of an average 26 year old. Spoiler alert: I am not an average 26 year old. 

As I grow older I  begin to gain more understanding about what it truly means to be myself and live my life, illnesses, abnormalities and all. I have tried to deviate from self loathing and wishing myself away, instead moving towards acceptance. Sometimes it works. Even still, there are some days it really doesn’t work, and I am left feeling defeated for the millionth time. When you’re chronically ill, defeat is something you’re force to get used to.

There is also the issue of those outside of my brain (as in, you know, literally everyone) who take my acceptance of my abnormalities and difference as self hate, self pity or simply giving up. On the contrary, I’ve begun to learn that accepting that I will never be normal is one of the most freeing gifts I could ever possibly give myself. It is only with acceptance of what I cannot do, and what I am not, that I can discover what I am capable of. It is only after I realize that the “standard” road is not for me that I can learn to pave my own that will still lead to happiness, despite it being more difficult to walk along. Not to mention that my concept of happiness will also be different than many others. Some days, I am not even walking, but crawling down my road; yet it’s better to crawl along the right road than to be stagnant on the wrong one.

It isn’t typical to be in as much physical pain as I am every day, to need so much medical help at such a young age, or to have as much trauma, anxiety or depression as I do. But this is my life, the only one I have been given, and as I have said before and will continue to say a thousand times more, I still believe it can be beautiful and thriving; I just may not get to that point as easily or in the same way as many others. What will help me is not to force myself to be normal, but to embrace the fact that I’ll never be, and to make goodness of that instead.

For all my friends who are unwell, atypical in any and all ways, or who didn’t get a say in their unique and difficult circumstance, know that though we may have to work a thousand times harder for every single part of our lives, and even though many days we might lose our never ending battle, we can still get to where we want to go. We have to be stronger and more patient than most. We may not be normal, but we are so much more than that – we are resilient warriors of suffering, and that is never to be dismissed by ourselves or others.

Sing it out, boy, they’re gonna sell what tomorrow means.
Sing it out,  girl, before they kill what tomorrow brings.
You’ve got to make a choice,
If the music drowns you out;
And raise your voice,
Every single time they try and shut your mouth.

~ Sing – My Chemical Romance

Eleanore Vs. Trust (Part One)

Dearest readers,

There has been so much on my mind and heart lately but very little has been able to come out. I believe part of this is from exhaustion, part from my anxiety being intolerable for reasons yet to be described, and part may just be true Writer’s Block. Regardless, I am growing tired of this war between my brain and I. Thankfully, it seems today I can finally compose something in full.

Yesterday, as I drove a whole four minutes to visit my darling friend Amanda, I thought about something she said yesterday about trusting doctors and knowing who really has the best in mind for her. I know this feeling well; as someone chronically ill, I am constantly having to explain to doctors how my illnesses work together since having as many as I do all at once (especially at my age) isn’t exactly standard. I am thankful for the doctors I have had who were compassionate towards me and tried to assist me as best they could. However, now and then I have also experienced the opposite, and many times I experience something in the middle of two extremes.

One of the first blogs I published when I started Sickly Stardust was a two part post about my battle with my facial maloclussion. To reiterate, a facial maloclussion is a genetic defect that caused my face to become malformed. It effects the shape and function of my jaw, my teeth, my speech, my ability to breathe and eat, and causes chronic pain in the shoulders, neck, jaw, and skull.  I was born with the condition and have struggled with since (You can read the two posts by clicking the links at the bottom).

When I was 24 I went to the University of San Francisco to meet with an orthognathic surgeon because I had been rejected by at least six other orthodontists who didn’t quite know what to do with my rare condition. After speaking to a knowledgable and kind doctor, he had my case reviewed by a panel of experts. Since it was a complex and strange case, he thought presenting it to the panel would be the best way to decide a course of action.

In the end, They decided that I would not benefit from the extensive orthognathic surgery because they were concerned it would actually increase my pain rather than make me healthier. They were also unsure if my bones could take the breaking and manipulation needed to complete the process because my bones have been weakened by my Celiac Disease. Ultimately, they told me to come to terms with the fact that the only fix to my maloclussion was something that my body couldn’t handle, and that I would benefit most from finding a pain management therapist to learn to live with my condition.

Fast forward to a few months ago when I had one of my episodes in which my jaw and teeth go into turbo-nightmare mode and cause me great suffering. My entire right side of my face felt swollen and was riddled with pain. It somehow felt that my right side of my face had been twisted. I was in complete agony and scared because this episode was far worse than any I had prior.

I went through several dentists until I found one truly spectacular one willing to help me. She did an extensive check up and talked to me at length about my maloclussion. For the most part I was in good shape, though she did see a small dark spot in my jaw which she suspected may be a weak spot in my jaw bone. I thought, “a weak spot already? I’m only 26. This just isn’t fair…I suppose the UCSF doctors were right.”

This lovely dentist ended up sending me to an orthognathic surgeon here in St. Louis, who, after pondering over my X-rays, told me that I absolutely did need to have the surgery done because I was only going to get worse with age. I told him about the decision made by the panel at UCSF, but he disagreed and said there was absolutely nothing to worry about. He then gave me the number of an orthodontist he was certain would take me while on MedicAid, and sent me on my way.

After the appointment I felt wildly conflicted. Part of me was terrified to have the surgery while the other part of me was ecstatic at the prospect of having one of my many illnesses cured. It would have a significantly positive impact on my body and my life, and if it reduced my pain long term, there was no reason for me to not have it if I could afford it. Still, the idea of having my jaw purposely broken was frightening.

As per the surgeon’s orders, I called the orthodontist as soon as I returned home. I explained to them the situation and asked for an appointment, to which they instantly replied, “we don’t take adults on Medicaid.” The woman quickly hung up on me. My anxiety surging and tears flooding my eyes, I called him right back, and he said to try another place. I immediately did, only to be told that Medicaid does not assist with orthodontics for adults, no matter the case. I hung up and cried for hours.

For a second, I had my hopes up that I had a fighting chance. I felt a light, thinking there was something to be done about one of the worst parts of my health. Just as quickly as it was given to me, it was instantly taken. I started to think about who was right; the surgeon here or the doctors at UCSF. What if they were correct in saying that my body couldn’t withstand the surgery? Maybe that spot of weakness in my jaw was proof. What if the surgeon here was wrong, and didn’t see the whole picture? Who am I supposed to trust with not only my body, but the entire look and function of my face and jaw? And, what’s more, if I can have the treatment, will I ever be able to afford it?

To be continued…

It feels like I only go backwards, baby,
Every part of me says go ahead.
I got my hopes up again, oh no, not again,
Feels like we only go backwards, darling.

Tame Impala – Feels Like We Only Go Backwards

To read more about my facial maloclussion, click here for Part One and here for Part Two! 

Eleanore Vs. Being My Illness

Dear stardust clumps,

Lately I have been stuck thinking about the origin story of Sickly Stardust. Not only my blog alone, but my entire life as a chronically ill person. Momma Rose asked me recently if I remembered when exactly I became ill. I explained to her that while I had been sick since birth, there were many events that unexpectedly threw me into the Upside Down, the worst being when I turned 18.

Right as I was deemed legal I was also deemed a Celiac. I hadn’t known it but the disease was tearing apart my body; I was severely anemic and malnourished, going into anaphylactic shock every three months, fighting to stay awake. When I look back, I was really fighting to do pretty much anything. There are many frustrating parts to getting diagnosed with a disease, the worst of course is actually having a disease. But there are other parts I wasn’t told about when going through a diagnosis. One of the aspects I struggled with the most was telling my friends that I was no longer an average teenager, but had suddenly been forced by my own body to figure out a new way to live.

I was conflicted about who to tell about my diagnosis and how I should go about it. I wondered if any of my friends would truly care, or if they would think, “why is she telling me this?” I considered the fact that since they were all completely average teens, they would have absolutely no idea how to react to one of their friends now being chronically ill. I feared I’d become a social outcast because I could no longer eat  at restaurants, and I at the time couldn’t even fathom sitting with people eating everything that was now dangerous to me. I also worried that because of my lack of health and energy I would quickly fall behind everyone else my age. For a while, I did.

As time went on there was one particular phrase I was met with – “you aren’t your illness”. I came to understand that many times this phrase is used when others have nothing else to say about a difficult health situation. Admittedly I have even heard this phrase in advertisements and from medical workers, all of them hoping to be encouraging. I comprehend that they usually mean those of us who are chronically sick have more to us than sickness. I agree completely with that sentiment, however as I have spent my entire life being chronically ill, I cannot help but think, how could I possibly not be my illness?

I’ll be honest, there are certainly times I struggle to remind myself that my personality encompasses more than my medical history. But every day I wake up in pain, persistently nauseated and fatigued before my day has begun. The pain reminds me chronic illness is very appropriately named; it is chronic, indefinite, everlasting. My illness affects every part of my daily life, my likes an dislikes, and they absolutely affect my personality. Therefore it is impossible for me to truly believe that I am not my illness. I most certainly am my illness, and my illness is me.

Instead of trying to minimize, ignore, or run from it, I have decided to change the narrative entirely. I am my illnesses, and they are me, and you know what? That is completely okay.

A few weeks ago I awoke in the middle of the night to one of my vasovagal episodes which can best be described as feeling like my brain is short circuiting. I started to shake and convulse, the nausea and intense sickness overpowering me. I called for my adoptive mother to bring me water and ice in hopes that I could prevent loss of consciousness. She came with the items I needed and I expected her to walk away and leave me to my misery as so many before her often did. Instead, she knelt beside my bed, held my hand, and helped me through it for the next hour until we were able to stop the shaking and I was able to be slightly confident that I would not pass out.

I don’t enjoy these episodes. In fact, I’ve explained on multiple occasions that they are one of the most dreadful parts of my chronic illness. I wish more than anything that I did not have to endure them for the last 16 years; however, for all my hoping it remains true that these episodes, as well as every aspect of my health, is a part of my life here to stay.

I am strongly against the romanticizing of disability, chronic illness and the suffering that entails being a person like me. However there is a distinction between romanticizing and wanting to change my view of a situation I had no choice but to live. If I can’t choose how healthy my body will be I can at least impact how I think about it.

There is a immense amount of fear, guilt and shame when it comes to chronic illness. Though I am a blunt and transparent person, especially in my blog, it never gets easier to explain to someone that my body doesn’t work as it should. No matter how many times I tell my stories I still fear being misunderstood, minimized, or worse; rejected entirely. I sometimes feel that I am not worthy of the time of others because I seem to be such a difficult anomaly. I worry that I’ll never be deserving the of happiness that everyone else around me seems to find with far more ease than I’ve ever known. I feel like I am too much work, even when I try to make life as simple as possible. I have been convinced by both my self deprecation and the abuse of others that ultimately I am little more than an inconvenience.

Well. Fuck all that. It is time to stop trying to convince myself that I’m not my illnesses . I am my illness, but look what I can do with them. Look how hard I fight, how much I try, how beautiful life can still be even with all that tries to hold me back. It is okay to accept chronic illness, to talk about it, to acknowledge it without awkward silences and bland cliches. I want to be myself, in my entirety.

I have spent the majority of my life wishing myself away, refusing to accept that this was the one life that I have been given for some unknown reasons that the universe never let me in on. Regardless of the reasons that I exist, I am officially  done with self loathing. Human life is not supposed to be convenient; it is supposed to be vibrant in its complexities, negative and positive.

Manic depression’s touching my soul.
I know what I want,
but I just don’t know how to go about getting it.

~Manic Depression- Moon Tooth (Hendrix Cover) 

Eleanore Vs. Cognitive Block

Dear human thingies,

The last week or so my writing has faltered which I find distressing. There is a legitimate and frustrating  reason that I am currently struggling to do what I so adore, but that doesn’t make me any less irritated. I’m trying to balance the two by writing about the problem; after all, that’s what my blog is for, isn’t it? 

Recently I started to experience worse jaw pain than normal, and upon visiting two dentists  found that my wisdom teeth are impacted, which is causing excruciating pain in my already malformed jaw. I need to have them removed, but getting that done is tricky since I am on Medicaid and have a complex pile of health issues. What should be a fairly routine dental procedure has turned into an ordeal for me and I am left in pain, exhausted, and anxious as ever.

This past Friday I visited my counselor as per usual. What was not usual was that I ended up having a panic attack right in her office. I was feeling extremely disassociated, my mind wanting nothing to do with the rest of me, and was overcome with pain. I explained to her that I was having difficult time thinking altogether, because the pain really seemed to be stealing the show in my head. “I feel like there is a giant wall in my brain and my thoughts are trying to climb over it but just can’t,” I told her, to which she instantly replied, “You’re experiencing cognitive block.”

I’ve said before that the only thing worse than being sick is being sick and not knowing why. When my counselor was instantly able to label my current unpleasant mental state I couldn’t help but feel an odd sense of relief, which I was able to beautifully articulate to her by saying, “it’s a thing?!” Indeed, cognitive blocks are a thing. A cognitive block happens when something seems to overtake your mind, whether it is pain, grief, depression or any other intense, prolonged sensation or emotion. As my counselor explained, this is the same reason some may experience what can be known as “blind rage.”

I have never experienced blind rage; however I have experienced cognitive blocks often in my life, the perpetrator usually being depression or intense physical pain. On my worst days, whether I am suffering mentally, physically (or more often than not, experiencing it all at once), my mind is flooded and cannot function beyond the sensation of pain. Some days it feels like a wall while other days it feels as if my entire mind is filled with cement so that my thoughts cannot even attempt to move. I am mentally  paralyzed with pain, sick and unable to process anything, let alone able to help myself move towards a less dreadful mental state…and so I find myself trapped.

These blocks worsen my mental and physical pain therefore preventing me from not only doing what I love, but from doing what I must. I was incredibly disappointed in myself last week when I was told by my boss that I made a serious error at work. Thankfully my boss was forgiving, however I felt terrible because I was afraid I couldn’t truly promise her that it would not happen again. I bit my tongue and assured her I’d be extra cautious because despite my sickness I still need to make money in order to survive. The truth is though, if I am experiencing a block, no matter how careful I am, I’ll still end up doing something wrong. 

Chronic illness means that cognitive blocks are a normal part of life, but I never get used to them. I am never okay with making mistakes, being forgetful, being unable to function as I normally do or feeling forced to leave my passion behind because my mind won’t allow anything to escape it. It never gets easier to feel constantly overwhelmed by physical pain while my mental health struggles to overcompensate for a hurting body. No matter what I am thinking about at any moment, it always comes back to the fact that I am in pain, and what I want more than anything is to be able to live without it.

Unfortunately most of my illnesses I will have all my life, which means that at best I can only try to find the best ways to minimize my pain, which I am working on regularly; or at least when I have the energy to do so. Fortunately, at least for today, after making a million phone calls, far too many tears, the help of a few kind strangers and an extremely lucky cancellation, I miraculously was given a dentist appointment tomorrow to hopefully start on a path to solve my dental issues. I am both excited and terrified, but I hope that I can soon be rid of this pain so that my mind can begin to work at least a little bit better.

Tomorrow is Valentine’s day, and I wish all my darling readers a lovely day with whoever (or whatever) they adore most.  The world needs love now more than ever (including myself) so I hope every kind of love spreads like wildfire. Love each other and love yourselves kindly.  Disclaimer: It is probably a bad idea to set things on fire in the name of love. Don’t do that. 

Oh, friend of mine
Will you be mine?
Please don’t be so…
It’s OK to be terrified (terrified)
Please don’t be so shy.

~Valentine – Pentatonix

Note: The photo above is from a video game called Psychonauts, which used to be one of my favorite video games until I got older and began to become ill from 3D and first person games. To read more about my life as a sickly gamer, click here! 

Eleanore Vs. Being a Medical Anomaly

Dearest delicious things,

I only address you as such because I am munching on caramel popcorn and I currently lack creativity. But don’t fret reader, I promise I have no intention to munch on you. Disclaimer: this does not apply in a zombie apocalypse. 

I think it’s fascinating that whenever I am wrestling with writer’s block my life instantly gives me something to write about. This was my experience today when I found myself once again in a dental urgent care still unsure about what has been causing my severe jaw pain the past few weeks. 

As I found out, my teeth are freaking the fuck out because my facial malocclusion crowds and misaligns them (and that’s only part of it). The kind dentist assured me that while it is nothing to panic about I would have to see an oral surgeon to talk about having some teeth removed, as well as to see about what other treatment they might find helpful for my maloclussion.

This would be fairly straightforward if not for the fact that since I am on Medicaid there are not many oral surgeons who wish to see me. My dentist’s advice was to call them and  tell them my unique situation in detail because as she put it, I’m exactly the sort of thing a dental school would love to get their hands on. Literally. She also told me I’m one of the most complex  cases she had ever seen. She isn’t the first to tell me this, and she probably won’t be the last, but I’m never sure exactly how to feel about it.

The challenges of chronic illness never stop; they don’t even go on nice summer vacations. Being a chronically ill anomaly provides even more challenge and complications. Since childhood my malocclusion has been regarded as one of the strangest most doctors have ever seen. I’ve had doctors go so far as to ask to write about me for possible journal submission, but at the time I wasn’t sure how I felt about being in a journal so I politely declined (little did I know I’d grow up to become a spoonie blogger). 

There are two main difficult parts of being a medical puzzle, the main one of course being that treatments are always difficult. Between my allergies and all my other illnesses, finding one treatment for a particular illness that doesn’t lead to the aggravation of another illness is a battle. Too many times I’ve had doctors stare at me in awe, unsure what to do with me, because the standard treatments are incompatible with my condition. Especially when it comes to medications finding one I don’t have adverse affects from is like playing minesweeper…and just like the game, it usually doesn’t last long before I explode.

On the one hand, since I have grown to have an affinity for medical things, the fact that I am a strange medical thing is neat in a twisted kind of way. Still I cannot help but sometimes wish that I was the spectator rather than the patient, because no matter how interesting my situation may be, at the end of the day I am physically and emotionally exhausted just from being myself.

Socially it is also frustrating. Though I have met a few people who have different parts of my illnesses, I’ve never met a person who has the majority in common with me. Recently I’ve found myself shying away from trying to connect with others who are chronically ill because in my experience, our conversations ultimately turn into contests as to who deserves more pity or who has had it worse. That is never my intention in a conversation; instead I much prefer to have the support of each other to help us through. The competition is mentally exhausting for me, and so I instantly retreat to the introverted side of my personality. 

On days like these when I’ve been in a medical setting pretty much all day, I return home feeling weak and troubled, my mind wandering about. I imagine what it would be like to be an easily treatable patient or to not be a patient at all. I envy people who can go to the dentist and not worry about Vasovagal Syncope or allergies to drugs. I wonder what it must be like for someone to be of average health, and to always get better when they’re sick or only end up in Emergency Rooms for accidents, rather than having it be a standard part of their lives. 

Then again, there is always a silver lining with me, and the one that comes with my illnesses is, well, me. Being chronically ill has inspired me to write, to set off on a mission to help people using my experiences that I would not have behind me if I were an average girl. It’s possible that I may not have been a writer at all if I were different. I always say that I am a writer with a life full of stories to tell, but what would I have to tell if I were a simpler human being?

I will never have the answers to any of these questions because I am never going to be like anyone else in any fashion. I will most likely be a medical anomaly for the rest of my life and I have to learn to be okay with that. Should I resist it as I had before, it will only lead me to more frustration and sickness, and I’ve had quite enough of both. While I never know exactly how to react when I’m told how strange or complex my medical situation is, I suppose the only way to truly react is by being myself…which naturally means that the answer would include a bad pun and loads of sarcasm. 

So, what does it feel like to be a medical mystery? It feels uncertain and frightening most of the time. It also feels a little special being able to make the jaws of nurses and doctors drop by merely telling them my medical history. But overall, at the end of the day, it mostly feels exhausting and trying, and like I need a plethora of hugs. I may not know of many treatments that work, but that one is foolproof for certain.

In other Stardust news, my adoptive mother bought me a giant panda for Valentine’s day because I am definitely an adult and not an easily excited child on the inside. 

To read more about my life with my facial maloclussion, click here,  then click here (it’s a two parter)!

A cloud hangs over,
And mutes my happiness,
A thousand ships couldn’t sail me back from distress,
Wish you were here,
I’m a wounded satellite,
I need you now put me back together make me right.

~Incubus – Anna Molly

Eleanore Vs. My Shot

Dearest warriors,

A few days ago my darling friend Nat posted a song to their Facebook called “My Shot” from the musical Hamilton. I haven’t seen the musical, in fact I didn’t even really know what it was about except obviously it had something to do with Abe Lincoln (I’m kidding, don’t hurt me). I pressed play and immediately found myself captivated; the song injected my soul with the fervor of a true revolution.

The song itself is about our country’s past history, and as someone who fell asleep during every history class ever you’d think I would not be so entranced by it. But I found emotions swirling inside me as the chorus exploded out of my speakers:

I am not throwing away my shot.
I am not throwing away my shot.
I’m just like my country,
I’m young, scrappy and hungry,
And I’m not throwing away my shot.

The fire of it all caused my heart to swell with pure energy.

That energy lead me to assess my own personal obstacles. My health, my desperate need for a stable home and stable income, and the uncertainty of my future. Each of my current trials popped into my mind like fireworks quickly fading just before the next thought was to appear.

Thinking about my problems usually causes me to fall short of breath and become overwhelmed by anxiety, however this morning as they appeared and disappeared while I listened to the cast of Hamilton singing, “rise up!” I felt a surge inside me that said, “rise up. You can do this.” There are millions of people in the world who have overcome tremendous suffering. I am taken aback when I think of all that humans have endured and overcome, yet I often forget that I too am a human who has survived and fought to move forward despite that which has tried to hold me back. Many of us are- warriors come in all forms of human beings, and we don’t always recognize the strength of it whether it is in ourselves or in others. 

I fail to realize that where I am now is significantly improved from where I had come from despite my life being far from how I feel it should be. I have found my way here not necessarily on my own, because I did have the help of many kind people, but I was carried forward by both others and my own resilience. I am not as healthy as I should be, and my health will always be a battle, but it is better than previous years. I have a few new friends who are some of the most wonderful people I’ve ever come across. Every day has been one of my shots to do with what I choose. Some shots have been extremely small while others have been monumental, but still it remains true that they all impact my life. 

The past year I have lost, but I have never felt more determined to create the life that I want. In a way I feel like I have more than before because for the first time I have some of the same drive and passion that “My Shot” so perfectly exemplifies.Well, I may not be anywhere near as badass as Alexander Hamilton. Realistically, I’m not even nearly as cool as the man that plays him  (and who wrote the musical) Lin-Manuel Miranda. But I have fought time and time again to come out of every bit of adversity that has come my way.

I have always been the queen of self-deprecation which never makes any situation better; but I believe it is time to realize that I deserve more self love. I want to teach myself that it is okay for me to make mistakes and that my mistakes don’t actually ruin everything as my anxiety would like to convince me. I want to love myself for every illness that sits underneath my skin and for every imperfection. I want to learn to be okay with being who I truly am as I continue to take my shots that I will sometimes miss. Even if I still fail, and I most certainly will fail, the fact that I still dare to strive towards a better life when there is so much that can potentially hold me back must mean something. It must mean something to me, along with my newfound passion for my life. My life has proved on more than one occasion that most of my goals will not come to me easily; therefore I will only succeed by courage and bravery, and by not throwing away my shots.

When you’re living on your knees, you rise up!
Tell your brother that he’s gotta rise up!
Tell your sister that she’s gotta rise up!

~My Shot- Hamilton the Musical

Eleanore Vs. This Again? I Mean, Really?

Dearest readers,

Today I find myself in a dental urgent care, which is not my favorite place to be. In fact, earlier today I compared going to the dentist to traveling through the deepest circle of Dante’s Inferno, and I don’t think that’s being overly dramatic in the slightest.  Yesterday, as well as the rest of the week, I decided to adult as hard as I could; I woke up early, did some yoga, and did everything to ensure that I would have a lovely day. Spoiler alert: I had a terrible fucking day.

There were several reasons why the day was unpleasant, but the one that had troubled me the most, by far,  was my experience at the pharmacy. I was prescribed some medication for GERD because the stomach virus I contracted a month ago is not only still damaging my stomach but has given me the new disorder. This was irritating news, however I figured I’d pop by the pharmacy after my long day at work, get the meds, and soon after find myself in bed which at the time was the only place I really wanted to be.

This did not go according to plan. I went to the pharmacy and I told them that I had recently been granted Medicaid which meant that the pharmacist had to call Medicaid before I could receive my medicine. While I didn’t mind this specific part, what I did mind was one of the other pharmacists asking across the counter, “is the medicine for your daughter?” “I think you have the wrong person,” I responded cluelessly. He walked over to the counter and asked me again. “Is the medication for your daughter?” “No,” I said, finally understanding why I was being asked this seemingly random question. “It’s for me,” I said firmly. He looked at me in disbelief, unsure what to say, before asking me my name and quadruple checking the card. I finally paid for my medication and tried to leave faster than the tears could fall from my eyes.

For much of my life the classic phrases of, “but you don’t look sick!” “You’re so young!” and “It can’t be that bad!” Have burned through my heart and mind when spoken by others, especially doctors and friends. It was worsened by my family who never believed I was sick, who constantly accused me of lying and exaggerating  despite seeing me countless times in ambulances and hospital beds with catheters in my arms and more wires about me than a Borg entity.

For about seven months last year I was without medical insurance and it was by far the most frightening seven months of my life. In that time I gathered 5,000 dollars of medical debt that I still have no idea what to do about. I was rejected from Medicaid six times before having another company assist me with fighting for it until finally I was approved.
Not a month later, while on the phone trying to make an appointment, I told the receptionist I had Medicaid. “Why do you have Medicaid, because you’re pregnant?” She harshly replied. “No, because I’m chronically ill,” I explained. A flat”Oh,” was all I received before I was scolded that I better have my card on me at the appointment to prove I actually was telling the truth.

I have expressed before that one of the only things worse than being chronically sick my entire life is being chronically sick and constantly met with disbelief. For all the illness I have faced at such a young age with little support, I feel I at the very least deserve to not be questioned about why I finally have Medicaid. Believe me when I say there is no pride in having to use it, or having to use it as often as I must to keep my health  just barely maintained. Every single time I touch the card it makes me feel as if I have failed myself, because I was never healthy enough to have a normal life or a normal job.

I love pretty, unique clothing and my turquoise prescription glasses. I adore having my nails painted at all times and I enjoy having my short hair trimmed into a steep angle. But none of that makes me any less sick. The picture you see above I took the morning after I spent the night in the Emergency Room last month. I felt sick and exhausted beyond compare, but I had a small glimpse of hope brought to me by a nice outfit I chose to wore.

The reason I strive to put energy in how I l0ok is because of how sick my body usually feels. My star printed clothing covers my aching bones and my stinging nerves. My bangs hide my facial malocclusion that has riddled my life with difficulty most would never have to experience. My polish decorates my fingers that contain inflamed joints along with the joints in my body. It all makes me feel a bit more like myself, especially when my sickness casts a shadow over the entirety of my being. There is a big reason that I don’t look sick; It’s because I try my absolute hardest not to, and most days, I don’t feel like it is working at all (Naturally, when I do feel it is working, I have to snap a selfie).

I’ve written this a thousands times and I will keep doing so until my fingers fall right off my hands. There is no way a chronically ill or disabled person is supposed to look. There is no standard I should be expected meet in order to convince people that my illnesses are real. Moreover, I am completely utterly exhausted of having to prove that I truly am chronically ill. I don’t take joy in my sickness, I don’t wish to brag about them for the sake of pity. But they are a part of me, a part of my life, and the only way to survive my life is to accept them and thrive with them inside me.

Some days I feel as if I am standing right in front of people, speaking, and yet I remain unseen. I hate the feeling of my heart sinking down into my stomach every time I must put the effort into convincing others that I’m not what they assume me to be. I don’t have much energy to begin with, and being forced to waste it on convincing is tiresome.

All people are different in their strengths and weaknesses. Why is that so hard to see?  I need the world to listen and to see people like me for everything that we are. We are screaming to be heard. Please, please listen.

No lyrics today, just a gorgeous chill song to end a frustrating week. Click the blue to travel to the YouTubes. 

Eleanore Vs. Stories of Beauty and Pain

Dear beautiful readers,

I come to you tonight with a confession. Are you ready? Here it is: 80% of the blog posts I write are inspired by conversations I have with other humans. Bonus confession, I don’t mind this at all. In fact, I adore it and am honored to be a part of such conversations, and I hope they never cease to influence me. 

A very long time ago (as in two days ago) I was speaking with a friend who has suddenly found himself in a difficult situation. The sudden increase of work due to an emergency paired with a decrease of time has left him overwhelmed for an indefinite amount of time. At a point I told him the one positive outcome of difficult experiences is how you get through them becomes a testament to you character. That comment in turn ignited my brain and caused me to think about my entire existence, because that’s just how my mind works. 

As a person who has identified as female most of her life, one of the phrases that was quickly wrapped around my throat was, “beauty is pain.” Generally, at least in my experience, this refers to leg waxing, eyebrow plucking, uncomfortable yet pretty shoes and flattering yet annoying clothing. I personally have always thought this to be a terrible way to live for at least my own life, and instead aspire to a balance between aesthetic happiness and physical comfort.

What I did not expect was for the cliche phrase to morph into something far more personal to me over time. You see, I am a human who has lived though a variety of pain throughout her life so far. I have experienced the pain of my chronic illnesses and sicknesses, the pain of abuse, various types of loss and then some. Though I wish I was not comprised of so much past and current pain, I can’t help but think that it has brought me beauty, for every story I have of overcoming pain has shed a little more light on the person I wish to be within my core.

When I was in college I had a vibrant communications teacher named Dr. Hannigan. He was completely unique in every regard. In fact, he alone that inspired me to pursue communications in hopes that I would make an impact through my own voice. While many of his classes were memorable, one of the most impactful was when he told the class that one’s true character comes out in great times of distress. A really good way to get to know someone, he said, was to go through a terrible event with them.

I’ll be entirely honest; I have not always loved the version of myself that has surfaced during some of the worst parts of my life, and I’m not proud of some of the things I have done in order to cope with my suffering. As I grow older I am trying to become more introspective, not in order to be overly critical of myself, but rather to fashion myself into the very best version of me.

I tend to think of human beings as characters in video games. The best games (in my opinion) put creativity into the backstory of the characters, so that the game becomes much more than beating obstacles and fighting on to the next level. The passion behind the fight, what has lead the character to find the strength to venture into danger, and what they have to gain from beating each level is what makes characters memorable and worth being attached to.

Much like characters of the fictional stories I love, we all have backstories as well, and they play a tremendous part in our existence. In video games, sometimes a character may summarize a story while more elaborate games will literally take you back to relive the memory in vivid detail. This same thing happens to people. When we become close with one another we reveal our histories. Some memories are glimpses while others are intricately recalled, and all of them add to who we are as a whole. They also give explanation to pieces of our personalities, helping us to understand one another on many levels rather than remaining stagnant on the surface.

The stories that come from our struggles show others and ourselves our strength and what we can do with it, especially in times when we were unsure if we could do anything at all. Not to mention, everyone loves a good story. These stories are monuments to our resilience and our passion for our lives, and though they do not come without great effort, nothing is more beautiful  than the courageous people we have become through the suffering.

For every day we thought we could not survive, we made it through. For every mountain of obstacles that overwhelmed us, we fought to take back control. For every broken heart, sickness, hospitalization and worst days of our lives, we may have not made it easily, but we have indeed made it, and that should be celebrated and appreciated. 

Whatever your story, I wish you all the courage you need to make it through to the next part.

Accident or not, admit it; it was a little awesome.

~Dustin, Stranger Things (don’t judge me for re-watching it!)